Memoirs of a little bird

Not Long Ago

I was going through the pictures I had taken recently in Boston. It was the last time I was with my husband. I’d forgotten all the pictures I’d taken of him while there.

This triggered a desire to search through our old photos, because as broken hearts know, we have to torture ourselves and look at what used to be. I found so many because there were so many memories.

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And while I kept sifting, there was a new anxiety gripping at my chest. I hadn’t looked at these pictures for so long. I looked like a completely different person.

I not only miss him, but I miss myself. I miss my world before Red Skin Syndrome, a world where everything was at our fingertips. Where I felt like I was his favorite subject through a lens. Where I could laugh and wear whatever I wanted and be completely myself. Where my skin was free. Where we were each other’s world and I felt indefinably beautiful all by the way he looked at me. These pictures are just a reminder of the potential we had. The happiness and the wholeness. The freckles and the hair. And the love.

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It’s incredible how powerful you can feel with someone beside you. Like you can conquer the world no matter what you’re going through.

So, because of this, I never realized the true power of having my spouse. I knew I couldn’t get through this without him. And now that he’s not with me anymore, there is this hole. That comfort is gone. That protection is gone. I feel like a shield that I cherished has now been stolen and I am left vulnerable to the world. When he was by my side, I knew I had someone who could love me in my ugliness and exhaustion. It gave me extra strength.

For instance, last Christmas, I spent it with my husband in Toronto while he was on tour. My health took a very steep downward fall. I was only 10-11 months into Topical Steroid Withdrawal, I was bald, and the ooze started to come back everywhere, including my face. One night, we hailed for an Uber car with a few of his crew mates. I was completely bundled up, feeling extremely aware of what I looked like. He stood by my side, holding me before the Uber arrived. The driver opened the doors and we all started to pile in. I was the one sat next to the big van door so I was designated to close it. In my weakness and cold hands, I was having a problem closing the door. “Sir, sir,” the driver called out to me. “I’m not a sir,” I whispered to myself as I desperately tried to close the door knowing everyone was watching me. “Sir, you have to –,” he began. “I’m not a sir!” I said out loud. I could feel the tension in the car. My heart was racing and all I could do was hold in the tears. We got the door closed (I don’t remember how) and we were on our way. Once we got to the mall, I couldn’t speak. I was in so much discomfort mentally and physically. I walked near to my husband and I remember as we rode the escalator up into a shop, I broke down in tears into his chest. We removed ourselves from the group and he consoled me. Just knowing I had him there with me, loving me in my despair made it a bit easier to keep going. I never would have gone out in the first place if I didn’t have him with me. I couldn’t face the world alone. Telling myself everything will be ok isn’t the same as the person you love saying it.

And now that’s gone. When I look at these photos and then look at the mirror, my face half wrapped up because my cheeks and upper lip are a bit weepy tonight, I am terrified of being alone in this. It’s like having a cast on your foot and two crutches, but then suddenly someone takes the two crutches away and says, now figure it out. You never thought you’d have to figure it out. You thought you’d always have that aid to be with you through it all.

I’ve heard many stories from many people this past week about their spouses leaving them or cheating on them. They opened up to me about their struggle. Some are from the Red Skin Syndrome groups and some are not. All of them are so sad, but I must say hearing from other sufferers who have devastating stories is absolutely heartbreaking. I knew many were going through this, but to actually hear from them… It’s almost as if I wish I WAS alone in this because I don’t want this pain for anyone else. Some are now living separately, battling through this alone, and some are trying to cope with this broken trust while staying together for the kids, and quite frankly, because they are not physically capable of doing this alone. I remember I relied on my husband for so many things the first year of this. And when he left for tour I had to move in with my mother because I needed her to do those things. How lucky I felt to be so loved by my husband and family. If I had to do this on my own from the start, or if I had to take care of little children while going through this, I don’t think I would have made it. I know I wouldn’t have.

So, I can truly say I am in awe of those who have gone through this journey alone, or have had the added responsibility of caring for other people and/or holding a full time job. You astound me in the most jaw dropping way. I am so proud of you. You are truly superhuman and you should be so proud of your strength. And strength doesn’t mean you’ve never broken down. It means you’ve kept going despite the day to day mountains you’ve faced. Red Skin Syndrome is a physical and emotional nightmare, sadly one that not just yourself goes through but the people around you. It steals so much and destroys so much.

I miss my former life. I miss my husband. And even though they are both gone, I am still so grateful for the love and support I am surrounded by. It’s not the same, but it is genuinely and unbelievably cherished in my heart. I wish everyone who was going through Topical Steroid Withdrawal was surrounded by the intense care and unconditional friendships that I have. I wish they had my families concern and unwavering support, no matter how many doctors tell us this is not real.

Take heart. Knowing your spouse is with someone else can unravel you. But remember we came into this world solo, and we were built as whole beings. We will find our way out of the rubble. We will not just survive, but live again with open hearts. It doesn’t feel like it at the moment, but we will. And for those who are going through TSW and have had this happen to them while still fighting this crazy condition, think of this as just one more thing, one more shitty avalanche on the mountain we are facing. It may slow us down, but it won’t stop us. If that love is going to pass us by, then it wasn’t meant to be.

We will heal. x “Take your broken heart, and turn it into art.” – Carrie Fisher

Hi,wow you are amazing.I am going through hell in my 15th month of tsw.I was glued to the pillow this morning and am losing hope, but I found your blog etc and you inspire me. I will continue to follow you.
Glenda